I’m restless. Restless inside my mind and this body—within the constraints of my wheelchair. I want to get up and move. To stretch, climb, jump and run. I’m convinced that the increased spasticity that’s taken over my legs—causing them to seize and shake uncontrollably—is my body’s way of giving physical representation to my inner angst. I’m struggling to find the positive spin. My mental health is not on the up-and-up and, while my depression has been in remission for a long time, it is shifting. And I am struggling.
Six months after my accident, my son started a new school. I knew nobody—truthfully, I wasn’t certain I knew myself yet inside this new body and new reality. My son was understandably nervous to make a change, but I was terrified. Many people who experience sudden disability say it shows you who your true friends are. They lose people. That never happened to me. Everyone I loved, showed up for me and my family. I didn’t want to meet anyone new. I was different now—obvious—a bit of a mystery, and I wasn’t sure I was ready to unravel all of that with strangers. And any parent can tell you that the drama within the social circles of the adults can sometimes rival that of the children. So to say the least, my anxiety was heightened as my son and I both found ourselves in new territory.
Imagine you could re-write your life.
Would you do it?
Would you remove your struggles and omit all of your sadness and pain? Would you remedy every regret—every bad decision? Would you take more chances—different chances—or try harder? Would you sift through your life, altering details and discarding parts of your history onto the cutting room floor until ultimately editing all of the pieces together to create your one perfect story?
Don’t give up now
your best kiss
your hardest laugh
and your greatest day
are still yet to come.
But what if they aren’t? What if everything in my life was better before paralysis? Maybe I had my best kiss, my hardest laugh and my greatest day—all of my best memories—before this injury became a part of who I am. How could I possibly have a best-of-anything-moment now that I have this disability? Everything was better before.
What if I believed all that?
It’s Time to Represent Everyone—A Paraplegic’s Perspective on Successfully Integrating Diversity in the Media
Do you feel well represented in the media? I did for the first 28 years of my life. Yes, the Caucasian, heterosexual, able-bodied female demographic isn’t usually ignored. But when I added disabled to the description, my representation all but disappeared from the airwaves. The lack of diversity in the media is an ongoing issue that I became well aware of after I traded my legs in for wheels. However last week, two posts appeared on my social media feeds—one local and one viral—that really got me thinking.
Today, December 3, is International Day of Persons with Disabilities. The theme for 2018 is about empowering people with disabilities and ensuring inclusiveness and equality. It’s a tall order for just one day. I’ve been somewhat privileged since my injury to be in a bubble of inclusiveness. I’m surrounded by family and friends who make it a priority to include me. I have a husband who does everything in his power to make sure I experience all that I can. I have this blog that is followed by people who take an interest in disability, accessibility and equality. But lately I am seeing through my bubble. I am noticing how foreign disability still is to so many who don’t have personal experience with it. I am noticing how quickly my concerns are ignored and how accessibility issues are disregarded. I am noticing how much work still needs to be done.
Lying in bed the other night, after a day that wasn’t unlike any other, I found myself suddenly apologizing. “I’m sorry I’m paralyzed”. My husband looked at me in that way he looks at me when I’ve said something completely unreasonable (I’m unreasonable fairly often so I know the look well). He jokingly told me to shut-up and we moved on. But as he drifted off to sleep I started to think about the kind of attention I bring to my injury. In many cases it is a joke or a comment to employ a sort of pre-emptive form of damage control. As though if I mention what I feel is the elephant in the room, I then take control over any obstacles that may arise because of said elephant. But I often also find myself apologizing for things that probably don’t require an apology. These are things that stem from the fact that I’m paralyzed. And paralysis, to be clear, is beyond my control (I triple-checked). So instead of falling asleep that night, I contemplated my approach. Why do I bring attention to my differences and apologize for my limitations? And should I stop?
Have you ever been unable to get to your car because the elevator that brought you up from the parkade is now out of service? Have you ever gone out with your friends or family just to be left at the bottom of a staircase while they figure out how to get you into the building? Have you ever missed out on an event because there wasn’t a bathroom you could use? These are just a few of the too-many-to-count scenarios that come up when you use a wheelchair. Being able to move freely around this world with minimal planning or forethought was something I most definitely took for granted before my injury. I had a very limited understanding of what wheelchair accessibility was all about. I have since been given a crash course on the topic and it is not just about the absence of stairs. No, it is most definitely so much more than stairs.
“We’ve been sold the lie that disability is a Bad Thing.” – Stella Young
It never ceases to amaze me how one short phrase can evoke such a strong emotional reaction. When I read the above quote on my Instagram feed the other day I was overcome by a lot of feelings. But high on the list were disbelief, annoyance and anger. I don’t think that I am often speechless, however when I tried to explain what I was feeling to my husband, I came up blank. Over the next couple of days, the phrase crept in and out of my thoughts: “We’ve been sold the lie that disability is a Bad Thing.” Really, a lie? Call me crazy but I don’t think it’s a great thing. I wouldn’t even say it’s a good thing. No, I would definitely say that disability is a bad thing; I would say that disability sucks!